Dr Thomas Tu was 14 years old when he was diagnosed with hepatitis B.
“It was overwhelming. All I heard was I will have it for life and it is associated with cancer; the rest was a blur,” he said.
Like many others receiving this news, Thomas longed for a community to connect with who could relate to what he was feeling, but went online and found nothing.
Now he’s changing that with the launch of the Hep B Community website.
“It’s sort of crazy that this is one of the most common chronic diseases – 300 million people around the world have chronic hep B infection – but you feel so alone when you’re diagnosed, like you’re the only person with it. That doesn’t seem right, that 300 million people feel so alone,” Thomas said.
The global forum is a free and safe space for people with hepatitis B to access information, ask questions and receive expert advice. Users can remain anonymous and reveal as much or as little as they choose.
Professor Jacob George, head of gastroenterology and hepatology at Westmead Hospital, said the Storr Liver Centre was proud to support the world-first online community forum.
“While there is still no cure, hepatitis B is now treatable. With early detection and ongoing management, people can go on to live healthy and productive lives,” Prof George said.
“One of the main barriers to this is stigma, so I commend Thomas for his work to combat the stigma and misinformation surrounding hepatitis B. This website is a fantastic initiative for people to connect with those who understand what they’re going through and to receive trustworthy advice.”
Thomas taught himself code to develop the ‘passion project’, which he runs in his spare time with support from organisations including the Westmead Hospital Foundation.
“What we’re trying to address, to some extent, is that you’re not alone. Things are a lot easier when you’re not doing it alone,” Thomas said of his passion project.
Now 35, Thomas is an accomplished researcher studying chronic hepatitis B at the Westmead Institute for Medical Research – specifically, its links to liver cancer and the search for a cure.
The chronic infection is spread through contact with bodily fluids, which has contributed to intense stigma around the disease due to its association with injecting drug use and sexually transmitted infections.
In reality, the vast majority of cases are contracted in infancy from mother to newborn child.
Screening and early detection is crucial as the infection can go undiagnosed with little to no symptoms for decades, during which time it could be causing deadly liver damage.
Thomas was recently inspired to go public with his diagnosis after two prominent leaders in the hepatitis B field did likewise.
I felt empowered by that, and realised this is something that I could do that can bring a lot of hope for people, and lift some of that shame,” he said.
“Thankfully I have received nothing but support and positivity. But the stigma and discrimination can have devastating consequences. I have heard of relationships and marriages ending after a diagnosis due to the misinformation and fear surrounding hep B.”
More than 200 people around the world have already joined the free website, where they discuss everything from medication and check-ups to stigma and travel issues.
While it is not designed to replace personalised medical care, experts with verified credentials can also offer trusted advice and flag any misinformation.
Westmead Hospital hepatology clinical nurse consultant Kristen McKee helps run hepatitis community outreach and support, including the district’s mobile testing van.
She believes the website is a great resource for those newly diagnosed or living with the knowledge for decades.
“We’ve always had an element of patient support in the form of small group education sessions, but it is really challenging to get a group of people together due to the issues around stigma and fear of being identified.
“It’s such an emotional burden to carry, and many people don’t feel comfortable talking about it so they don’t seek the correct information. Having an opportunity to feel a little bit more comfortable to be open and have some questions answered is a really positive avenue,” Kristen said.
To support HepBcommunity.org, check out Westmead Hospital Foundation’s dedicated hepatitis B campaign.